issue brief

October 2007
Brief 3 of 6
issue brief
Navigating Health Care: Why It’s So Hard and What Can
Be Done to Make It Easier for the Average Consumer
In February 2007, AcademyHealth conducted a meeting on behalf of the Robert
Wood Johnson Foundation to examine the
role of consumer engagement in improving
the quality of health care. In preparation
for this meeting, five papers were commissioned on the following subjects: consumer
activation, consumer choice of health plan
and provider, consumer choice of treatment,
patient navigation and the appropriate role
for consumers. This issue brief is based on
the paper exploring the challenges faced by
consumers as they attempt to navigate the
health care system, which was authored by
Shoshanna Sofaer, Dr.P.H.
Carving Out a Role for the Health
Care Consumer
sible approaches to reducing the former
while improving the latter, the direct role of
health care consumers has assumed a more
prominent place. Previously, the patient—the
central player in the health care space—was
not seen as part of the solution. Now certain
health care stakeholders have come to believe
that patients need to take a more active role
in all parts of their care. Some efforts in this
area are intended to make consumers more
aware of the costs associated with their use of
health care services and selection of providers
(e.g., “consumer-directed” health plans), while
others focus on improving patient experiences and clinical outcomes (e.g., patient
self management, shared decision making
between patients and providers and greater
patient “activation”).
More recently, policy-makers and researchers have begun to examine the relationship
between health care cost and the quality
of care received. In the discussion of pos-
Taken together these efforts may foster
some improvements, but none constitute
a big-picture “fix” for the cost/quality
problems that currently exist, nor do they
introduce the elements of ease and continuity that are so lacking for consumers trying
to get care in today’s highly fractured health
care sector. Perhaps this challenge—as seen
from the health care consumer’s perspective—is best expressed by Jessie Gruman,
Ph.D., who laments that “being a patient in
the United States is like being drop-kicked
into a foreign country. You don’t know the
language, you don’t have a map, you can’t
tell who’s in charge, and all you want to do
In the last several decades, efforts have been
made to reduce rapidly escalating health care
costs by applying pressure to various players in the sector. These efforts have been
largely inadequate. In 2005, total national
health expenditures rose 6.9 percent—two
times the rate of inflation—and represented
16 percent of the gross domestic product.
Furthermore, the overall financing and
affordability picture for health care in the
United States looks bleak.
AH issue brief RWJF sharon 3.indd 1
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issue brief — Navigating Health Care: Why It’s So Hard and What Can Be Done to Make It Easier for the Average Consumer page 2 is go home.” Fixing discrete segments of
the sector may do little to improve this
experience, but there is hope that a broader
understanding of patients’ experiences, as
they move through entire episodes of care
and beyond, will help inform potential
policy solutions.
Patient Navigation: What Is It
and Why Is It Important?
The concept of patient navigation has
emerged as a way of characterizing the
experiences of consumers in health care.
For the purposes of this issue brief and the
paper on which it is based, patient navigation is defined as “the process(es) by which
patients and/or their health caregivers
move into and through the multiple parts
of the health care enterprise in order to
gain access to and use its services in a manner that maximizes the likelihood of gaining the positive health outcomes available
through those services.” Given the highly
fractured and—to many—inscrutable
nature of the U.S. health care sector, this
process is fraught with challenges for most
consumers, especially those who are sick,
stressed, busy with their everyday lives or
otherwise disadvantaged in taking on the
tasks involved.
For patients to get timely, appropriate,
affordable and quality care, they must be
able to navigate the health care system.
When it is too burdensome, patients and
their caregivers respond by delaying or failing to get needed care or by seeking care
in inappropriate but more easily accessible
settings, such as emergency departments.
Navigation challenges may also inhibit the
capacity of certain individuals more than
others, which can exacerbate health disparities. This leaves many vulnerable to the
clinical consequences of poorly navigated
health care. For example, those with limited English proficiency face the additional
challenge of literally understanding what
they need to do to gain access to appropriate care. It is no wonder that, on average,
Americans receive appropriate health care
only about half the time.
In addition to poor clinical consequences,
health care efficiency is also seriously compromised by poor navigation. An enormous
amount of time and energy is expended in
trying to explain the workings of the health
care system to patients and their caregivers.
Just think of all the forms that people need
AH issue brief RWJF sharon 3.indd 2
to read, understand and sign. They often
end up signing whether they understand a
form or not. Despite the system’s effort to
make things clear up front, the complexity of most situations leads to problems
or miscommunications that need to be
untangled later. These problems often result
in overuse, underuse or inappropriate use of
services (e.g., duplication of diagnostic tests,
missed physician visits and visits that are
useless because necessary information has
not arrived on time). All this, in turn, undermines the goal of getting value out of every
health care dollar.
Why Is Navigation of Health Care
So Hard?
To understand why navigating health care
is so hard, it is instructive to think about
providers—both individuals and organizations—in the context of organizational theory. We know that all organizations need to
both specialize and coordinate. We expect
health care providers to specialize in order
to perform tasks with a high degree of technical expertise and effectiveness, but we also
need them to coordinate within and across
their own settings in the health care space to
maximize outcomes, including the patient’s
experience of care. Up to this point, U.S.
providers have generally done well in specializing and rather poorly in coordinating. Our payment mechanisms have likely
fostered this environment. The dominant
fee-for-service paradigm has engendered
support for numerous specialized medical
technologies and complex procedures but
has failed to encourage care coordination
across providers, settings and time.
Historically, the bottom line for health
care organizations has not been affected
by poor coordination. It is consumers (and
payers) who have paid the price—both
directly in terms of cost and indirectly in
terms of hassle, wasted time and diminished outcomes. Given the extremely
challenging prospect of redesigning organizational structures in health care to be
more accommodating to patients, it is not
surprising that most of the efforts thus far
have simply tried to help patients deal with
obstacles in the existing system. In other
words, trying to make the best of what
you’ve got. For example, “care managers,”
“patient navigators” and other specialists
have been brought in to help individual
patients make their way through one or
several episodes of care.
What Can Be Done to Make It
Easier for Patients?
To fully address patient navigation problems
and their consequences, system-level interventions are needed. For example, at the medical appointment level, some have suggested
having group appointments, which could
expand and perhaps improve the time available to patients and providers for discussing
conditions and treatments. Another model
might be for medical teams to be constructed
around patient needs, so that complex diagnoses or treatment issues could be fully discussed and decisions made with the benefit of
having all relevant parties at the table.
Though not yet a reality, there are some
examples of structural innovations that may
facilitate patient navigation. Integrated delivery
systems, which allow multiple health services
to be managed by the same organizing entity,
may improve coordination and ease patient
navigation. This could be especially true in
systems where health care coverage is integrated with delivery, such as Kaiser Permanente
and Group Health of Puget Sound. Another
idea being promoted to enhance patient
navigation is the “focused factory,” which
involves the reorganization of health care
reimbursement and competition around care
for particular health conditions, such as cancer and diabetes. This “one-stop shopping”
model enables patients to get all the care they
need in one place, so long as it is related to
the particular condition. However, the most
serious navigation, quality and cost problems
frequently arise for patients with multiple
conditions, not just one. Presumably, communication and information sharing between
the various actors in these systems would be
better, but we do not yet know whether this
would translate into easier patient navigation.
And while the creation of interdisciplinary
teams has been cited as a possible solution
and can lead to improved coordination and
quality, there is no evidence to suggest that
this would necessarily improve patient navigation, particularly given that teams do not follow patients though transitions of care from
one setting to another.
What Does Navigation Mean to
the Average Patient?
Thus far, the health care system has
assumed that with some guidance consumers will “figure it out” for themselves.
Even to the savviest of consumers, however, this can be a daunting and often
unpleasant task.
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issue brief — Navigating Health Care: Why It’s So Hard and What Can Be Done to Make It Easier for the Average Consumer page 3
Coverage Decisions: At the outset, and
assuming that they have a choice of coverage (and assuming they can afford one or
more of the options), consumers need to
select and figure out how to use a health
plan. People getting coverage through
employers or public payers can, to some
extent, rely on those parties to provide
some guidance, but people in the individual
market are basically on their own. Even
assuming that the volumes of forms and
paperwork are written to be comprehended
by a lay audience, there is considerable
variation in people’s abilities to understand
the information and apply it to their own
situation. Once a plan has been selected,
patients still need to learn to use it to their
advantage. This involves knowing what is
covered at what level, following ground
rules for using services (e.g., referral processes) and learning what to do in the case
of a reimbursement dispute. For those in
need of public assistance, another set of
hurdles must be cleared just to prove eligibility for coverage.
Health Care Service Decisions:
Choosing the best health care services—
and then using those services effectively—
adds yet another set of potentially challenging tasks for consumers. Even a simple
doctor’s visit can pose a navigational
challenge. Much emphasis is placed on the
selection of a health care provider, and
there is an ever-expanding body of information being disseminated to consumers in
the hopes that they will select high-quality,
low-cost providers. Yet the extent to which
this choice is meaningful depends on
whether providers are covered under the
plans consumers choose, and are willing to
accept new patients.
Once patients have successfully chosen
providers, their navigational tasks are
highly dependent on the level of health
care services required to prevent or manage
their illnesses. In addition to the emotional
burden of illness, people challenged with
major clinical events may have to assume
an even greater responsibility for managing
their own care. That may include learning
about a variety of highly technical treatment options, working with providers to
make appropriate treatment decisions, and
ensuring that their care is being coordinated, since the system is not inherently
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coordinated. For those managing multiple
conditions over a long period of time, this
workload is compounded, and the job of
navigation becomes even more challenging.
Facilitating Patient Navigation:
Where We Are Now and Where
We Need to Go
Thus far, efforts to improve patient navigation have not challenged the existing
care delivery structure; they have only
introduced professional or lay “navigators”
to assist patients within specific domains
of care. In many of these instances, the
role of the navigator is to 1) help patients
access and use services, and 2) provide psychosocial support. This support function
has been demonstrated to be a life-saving
element of cancer care.
Health plans have used nurse navigators to
manage complex conditions. Care managers and coordinators represent another version of this approach. Humana, for example, employs a set of trained nurses who
initiate contact with beneficiaries whose
diagnoses or service utilization patterns
suggest a higher risk and or cost. Though
this practice is common, there is little evidence to suggest that it improves patient
outcomes or facilitates patient navigation.
Researchers looking at the use of navigators in cancer care suggest that these team
members “differ from other cancer support personnel in their orientation toward
flexible problem solving to overcome
perceived barriers to care rather than the
provision of a predefined set of services.”
This suggests the need for further research
to better understand the value proposition
of such navigators.
Moving forward, it will be important to
consider three primary questions in order
to develop a research agenda that will help
to better understand patient navigation:
1) Where should attention be focused?
2) Which patients should attention be
focused on? 3) Which points in the health
care sector should be areas of focus? With
respect to the first question, given the
role of the primary care provider as the de
facto coordinator of care (whether it actually happens or not), it may be instructive
to focus research in this area. Given the
limited time and capacity of solo and small
practice providers coupled with reimburse-
ment pressures, it may be best to start with
larger, multispecialty groups. This would
also afford the opportunity to explore navigation both within and between complex
institutions.
Whatever settings are determined most
appropriate for initial exploration, patient
navigation researchers may wish to look
for opportunities to piggyback on work
that is going on in related areas, such as
care coordination, transitions management
and disease management. They may also
wish to explore opportunities for introducing more patient-centered tools that can
facilitate coordination and integration of
care, such as personal health records.
These specifics aside, several priority issues
for initial research have been suggested,
including:
1. Using population surveys to develop a
baseline “epidemiology” of patient navigation in order to better appreciate and enumerate all of the elements involved and to
identify who is most affected by navigation
issues, under what circumstances they are
affected and how patients currently deal
with system complexity
2. Conducting observational studies that
look at different patient navigation
interventions currently being used, as
well as treatment settings with different
levels of intended structural “integration” models to measure their effect on
patient outcomes and experiences
3. Developing interventions at the systems
level to re-engineer the health care sector so that it becomes more inherently
navigable by consumers
4. Documenting the health and financial
consequences associated with problems
in patient navigation
While research in all of these issue areas
would require significant work, we will not
fully appreciate the societal cost associated
with the status quo—nor the potential
savings associated with evidence-based
solutions—until we better understand navigation problems in U.S. health care.
About the author
Alison Rein is a Senior Associate with
AcademyHealth.
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